Keith Meldrum is an amazing human living with pain. His posts throughout National Pain Awareness Week 2018 were so fantastic I asked if I could share with all of you. Enjoy this 2 part post from Keith about the truths of living with pain.
Keith has lived with chronic pain for nearly 32 years ( as of 2018), following a serious single vehicle motor vehicle crash in 1986, in central British Columbia, Canada. As the sole occupant, he fell asleep while travelling on the highway and rolled his car down a large bank As he was driving an older car, he was only wearing a lap belt with no shoulder restraint, and while the seat belt saved his life by keeping him in the car, it slipped up to his abdominal wall and the rolling action of the car flipping down the bank tore through his left abdominal wall and his large and small bowels; he lost most of his blood volume through internal bleeding and nearly bled to death at the bottom of the bank, alone.
Following the initial emergency surgery, Keith required multiple follow up surgeries over the years and by the time he was 19 realized that he had persistent pain. Over the years, more abdominal surgeries followed in an effort to trying to fix the pain until it was realized that surgery was not the answer. After trying different nerve block injection treatments to manage pain, in 2005 Keith was deemed to be a candidate for a spinal cord stimulator (SCS) program at a leading hospital in Vancouver, British Columbia, Canada. SCS for abdominal pain is not common as it is most effect for limb pain.
The SCS helped Keith manage his pain and was is introduction to pain science and the biopsychosocial model. The SCS was effective until it had to be replaced in late 2015 and since then it has not been effective. After a few revision surgeries, the pain specialists determined that he will best be served by a new SCS technology that is available in the United States, but has not yet been approved in Canada.
Keith lives in Kelowna, British Columbia, Canada with is wife Barb, his step-son Chris, and Parker, their Australian Labradoodle. Keith is a Deputy Fire Chief for the City of Kelowna Fire Department and is responsible for Communications and Emergency Management.
Living with Pain Day 1: VALIDATION
In recognition of National Pain Awareness Week 2018 each day I will talk about one of the foundational issues that I have come to learn about chronic pain that has helped me.
For me, understanding some of the science of pain and the complex relationship between the body and mind has allowed me to better understand my pain and do things to help myself. I still have pain every day and I am currently dealing with a significant increase in my pain due to several factors; but I better understand these influences and factors and that helps me deal with it more effectively than I would have in the past.
Let’s be clear, for me I can’t explain or talk pain away; recently there are days when I am very frustrated and angry, but self-awareness allows me to deal with these emotions in a healthier and more productive way.
“Let’s be clear, for me I can’t explain or talk pain away”
What I offer are things I have learned over my more than 30 years of living with persistent pain through trial and error, talking with others, and research and what I believe are fundamental to living a better life with pain. I understand that every person’s pain experience is unique as pain is very individualistic; there is no panacea.
Today I want to talk about validation.
The Oxford Dictionary defines validation as “recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”.
One of the greatest challenges faced by people that have persistent pain is being validated. This lack of belief or understanding may come from health care providers, family, and/or friends; often people with chronic pain don’t look unwell. Many people that live with pain every day find ways to manage and cope to get through their day, putting on a mask of normalcy to live somewhat of a normal existence. This is done for many reasons, but often because, over time, it is exhausting trying to explain (or what can feel like defend) to others that they have pain. Many chronic illnesses don’t present outwardly, but that doesn’t mean they are not real.
Lack of validation of a person’s pain adds to the stigma that many face and often causes people with chronic pain to withdrawn and isolate because it feels easier than having to try and explain, or justify, over and over about their pain, only to be met with looks of doubt or, worse, to be told that it really isn’t that bad.
“Chronic pain is complex, and many people don’t understand it, but that doesn’t mean it isn’t real. Science proves that it is real.”
Chronic pain is complex, and many people don’t understand it, but that doesn’t mean it isn’t real. Science proves that it is real. If a health care provider doesn’t understand chronic pain there is no excuse for them not to educate themselves. Information is readily available to gain at least a basic understanding of pain.
Validation of a person’s pain can be transformative. For me, after nearly 20 years the transformation started with “we believe you”.
Living with Pain Day 2: Understanding Pain
On the second day of the #NPAW2018 Pain BC Canadian Pain SocietyInternational Association for the Study of Pain (IASP) I want to address understanding pain.
As pain, and chronic pain, is complex, I don’t offer the concept of understanding pain lightly. Over the last few years I have turned my attention to learning about pain through scientific journals, research, conferences, and talking with those that are leaders in their respective fields of pain management and I know I have only scratched the surface. The knowledge I have gained has offered me a different perspective, made me appreciate the incredible body/mind connection, and has allowed me a slightly different lens in which to view pain through.
The many facets of pain
I would like to offer some insights recently offered by Dr. Bronnie Lennox Thompson PhD, MSc (Psych) 1st Class Hons, DipOT, Registered Occupational Therapist, in her blog HealthSkills (https://healthskills.wordpress.com/) . Dr. Lennox Thomson has worked in the field of pain management most of her career and is a Clinical Senior Lecturer at the University of Otagao, Christchurch. In her recent blog, Pain Science is not a Thing she speaks to the multiple factors that affect pain, noting that “understanding pain involves multiple disciplines: yes to biology, and especially neurobiology because the experience (as we understand it now) involves neurobiological processing. But it’s also about psychology – the scientific study of the human mind and its functions, especially those affecting behavior in a given context; sociology – the study of the development, structure, and functioning of human society; the humanities – the study of how people process and document the human experience; politics – the activities associated with the governance of a country or area, especially the debate between parties having power; and Anthropology – the study of humans and human behavior and societies in the past and present. Social anthropology and cultural anthropology study the norms and values of societies. Linguistic anthropology studies how language affects social life.”
Biopsychosocial Model: The role of the brain in pain
Consider this for a moment; pain involves biology, neurobiology (the biology of the nervous system), psychology, sociology, humanities, politics, and anthropology. That is a staggering number of complex systems and issues that range far and wide that combine to affect one’s pain. For many people, they may only consider the biological aspects of their pain, which is understandable, but as noted by Dr. Lennox Thompson there are multiple influences beyond the biological effects. Understanding that pain is much more than just the biological component has given rise to the widely adopted biopsychosocial model of pain; this is an assessment and treatment modalities in consideration of the biological, psychological, and the sociological aspects of a person’s experiences.
One of the jobs of the brain is to analyze information coming in. When danger signals get to the brain, it needs to decide what is going on and how to protect you (Pearson, N. (2007). Understand Pain, Live Well Again. (n.p.): Author)). Pain is the alarm system warning of danger; as a hand near a hot stove and we feel pain we pull back so as don’t cause tissue damage by burning ourselves, a twisted ankle is a warning that more movement may cause damage, and repeated twisted ankle pain causes one to tense up when nearing uneven ground. Pain is a warning, an alarm. However, pain is not always an accurate indicator of what is occurring in our bodies; consider referred pain which is pain felt in an area where there is no tissue problem or empathy pain which is pain someone may feel when they see someone else getting hurt or expressing pain.
When pain continues
When pain persists, nerves learn to detect smaller problems and send more signals about these problems. Nerves in the spinal cord start to act as if normal body sensations are danger signals and the brain starts to pain attention to the area of injury. The brain starts to produce hormones that increase the body’s stress reactions and fight/flight/freeze responses. This does not mean that the pain is not real, as it is very real; pain is an experience and finding the right things to do, and practicing them over and over, is the key to making one’s nervous system less sensitive and turning down the protective reactions.
Paincloud, an educational platform for healthcare professionals that are working with people in pain, offers an effective illustration of the effects of persistent pain. See graphic at the top of this post.
However, as pain is associated with more than tissue damage (i.e. phantom limb pain) Professor Lorimer Moseley, Professor of Neuroscience and Chair in Physiotherapy, The Sansom Institute for Health Research at the University of South Australia states that “pain scientists are reasonably agreed that pain is an unpleasant feeling in our body that makes us want to stop and change our behaviour. We no longer think of pain as a measure of tissue damage – it doesn’t actually work that way even in highly controlled experiments. We now think of pain as a complex and highly sophisticated protective mechanism” (https://bodyinmind.org/what-is-pain).
“See, pain is complex, complicated and chronic pain cannot be explained in 1,000 words or less.”
See, pain is complex, complicated and chronic pain cannot be explained in 1,000 words or less; it is subject to ongoing learning and research by some of the world’s leading and brightest scientists and researchers. I witnessed some of this dedication and focused attention at the International Association for the Study of Pain World Congress in Boston in September. The conference was filled with hundreds (in fact, a few thousand) researchers, doctors, therapists, clinicians, and people living with pain focused on advancing knowledge and better understanding of pain.
Pain is very individualistic, and pain can affect people very differently and it all can’t be placed in a simple box. I have offered what I believe are some of the foundational elements that affect people with pain and I would offer that even some knowledge is power. It can help remove the mystery and angst surrounding pain and empower people to manage their pain in a more effective way.
Living with Pain Day 3: Words Matter
Following on yesterday’s discussion about understanding pain, a very complex topic in which science finds itself still learning, I would offer that the words use by health care providers, and society, are important to most people that live with chronic pain.
The necessity of understanding pain (as much as we can) is a healthy debate/discussion point; every person with pain is unique and what matters to one may not matter to another. For me, I find it very helpful to try to better and understand the science behind pain as that aligns with my somewhat detailed and critical thinking (my post-secondary education is applied science technology in civil engineering so maybe this is the way I am wired). For others, this may not be as important, but I believe what is universal is the affect that words have on people who are in pain.
People with persistent pain are trying desperately to make sense of their situation and experiences and will often search out those that they feel have an answer or fix. It’s all about wanting to make sense of this somewhat nonsensical situation. Patients are often in a place of vulnerability, thinking there is something wrong with them or they are broken. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5357296/).
“It’s all about wanting to make sense of this somewhat nonsensical situation. Patients are often in a place of vulnerability, thinking there is something wrong with them or they are broken.”
I clearly recall wondering how, after being told that they had “fixed” everything that was broken inside of me and that there was no more surgery to be done that I still had pain. I assumed it was because the surgeons didn’t care anymore or that I hadn’t found the right clinician. Then I started to wonder if there was something wrong with me mentally; how I could possibly not need to be fixed anymore but I still have this pain all the time. It didn’t help that my family physician told me that there was nothing wrong with me and that this was all in my head. I would suggest that many have experienced something very similar to this.
With respect to the effect of words, to quote my good friend Joletta Belton, the “words we hear from others…become our own words. They become a part of how we make meaning of our experiences, a part of our belief system about ourselves, who we are, what we’re capable of. What we’re not capable of, who we aren’t” (http://www.mycuppajo.com/language/).
When people are looking for answers, trying to make sense of it all, patients are best served by receiving factual information and evidence-based answers to their questions, not words that elicit fear or angst; words such as damage, weak, asymmetrical, subluxation, degenerating, dysfunctional, unstable, etc. It is important that health care providers are open and honest and while they may want to give their patient an answer to what they are seeking, it is necessary that the answers given, the words used, do not do more harm than good.
When people are already in a place of vulnerability and fear, words that are tossed out that are inaccurate and not supported by facts and evidence will not only have a negative psychological effect on the patient, but due to the established psychological connection to pain, may add to a person’s pain.
Living with Pain Day 4: Acceptance
On the fourth day of #NPAW2018 #LivingWithPain I would to discuss acceptance. Acceptance in the context of chronic pain can be a very sensitive topic, and can elicit an emotional response, due to the perceived connotation of the term acceptance.
Acceptance without context is very basic. Merriam Webster defines it as the act of accepting something or someone. When we refer to acceptance with respect to chronic pain, it does not mean giving in or giving up but rather coming to a place in one’s life where you stop fighting, understand that this pain will be with you, and that it is important to find ways to live the best life despite the pain. This is a tremendously challenging concept and position to reach for many people. For me it took many (many) years to understand this. I fought and fought and then fought some more as I was sure that the more I fought the pain the better chance I had to beat it.
These words “fought” and “beat” speak to battle that was going on inside of me, and many people, and what I didn’t realize is that the harder I fought, the further I moved away from a position of being able to live better with pain. The fighting, in fact, made it worse as it added stress to my life and as stress is a sympathetic nervous response and pain is a sympathetic nervous response, all I was doing was adding to my pain.
For years I was in a cycle of fight the pain, increase the pain, fight it more, increase the pain, and then end up in the hospital for break through pain control. I would get the pain back to a manageable level, be released from the hospital, and in time start the cycle all over again. I was desperate not to let my pain define me. It was not until I came to a place of acceptance that I was able to turn the lens around in how I viewed my pain, and instead of fighting and pushing it down I was able to view it as part of who I am. Pain does not define me, but it is one of the many threads that are woven into this amazing tapestry that is my life.
“It was not until I came to a place of acceptance that I was able to turn the lens around in how I viewed my pain, and instead of fighting and pushing it down I was able to view it as part of who I am. It does not define me, but it is one of the many threads that are woven into this amazing tapestry that is my life.”
Acceptance is not giving in; it is making a conscious decision that, despite the pain, you are going to live the best life you can. Reaching acceptance is very hard as it is tied to a number of emotions, such as loss, grief, and anger. These are all perfectly normal and understandable emotions; loss of self, grief at not being the same person you once were, and anger and not being able to control the pain and how much it affects your day to day life. The goal is not to dwell on these negative emotions, but to find effective ways to work through these towards acceptance.
Another great quote from Dr. Bronnie Lennox Thomson is that “acceptance means reducing unhelpful brooding on pain, or trying to control pain” (https://healthskills.wordpress.com/…/pain-acceptance-rather…). Life doesn’t stop just because pain is a daily companion; even if pain intensity gets in the way of wanting to do things, people who accept their pain as part of themselves are more able to keep going.
In the context of pain, one view of treatment is to allow patients to engage in activities that allow for a quality of life sufficient for their needs. It is within this purpose that acceptance of pain can be relevant – sometimes greater acceptance of, and consequently less time and energy spent struggling and avoiding, pain may free up behavior to allow for the pursuit of what is valued (https://bodyinmind.org/pain-acceptance/).
I would suggest that acceptance is one of the most important factors in being able to move forward and away from focusing on pain or trying to control it. Again, acceptance in no way means giving up; acceptance is one of the strongest actions that a person who lives with pain can take. It is a sign of strength, not weakness.
I love this quote from Michael J. Fox; “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.”
Thank you Keith for sharing all these nuggets with us. I do hope people will take time to read not only your words, but to examine the links within and continue reading Part 2!
For support don’t forget to join my facebook support group. Go ahead and tag Keith and let him know what you thought.